Living with feelings of difference. The impact of delayed sexual and reproductive development on women's lives

This thesis was undertaken to consider women's experiences of living with endocrine
conditions that lead to delayed sexual and reproductive development. Delayed sexual and
reproductive development results in the body being unable to produce sufficient
hormones to induce normative sexual and reproductive development. For women, the
physical consequences include a failure to spontaneously menstruate, poor development
of secondary sexual characteristics (absence of breast development and sparse pubic hair)
and fertility difficulties. What little research that exists on delayed sexual and
reproductive development has focused upon men's experiences. These studies report
severe long-term consequences of living with an underdeveloped body. However, the
psychological, social and emotional consequences of delayed sexual and reproductive
development for women are not well understood.
This qualitative study used an Interpretative Phenomenological Analysis to explore the
women's subjective experiences of delayed sexual and reproductive development, paying
particular attention to their experiences of delayed puberty, body image and infertility,
throughout adolescence and adulthood. Eleven women were recruited through a specialist
endocrine clinic and interviewed individually. The women described how they viewed
their bodies and to some degree themselves, as 'not normal' in adolescence. The lack of
secondary sexual characteristics, in particular breast development, marked them out as
visibly different from peers. The women's distress in relation to their bodies prompted
them to seek medical assistance for their delayed development. The women explained
how the consequent medical induction of puberty resulted in them looking physically the
same as other women, which produced positive feelings. However, the discovery of
fertility difficulties on diagnosis prompted further negative self-appraisals. The women
employed various strategies to regulate their feelings of difference. The study revealed
how the condition impacted upon the women's relationships and gender identity. Based
on the findings, it is argued that women living with delayed sexual and reproductive
development encounter a range of psychological challenges in adolescence and
adulthood. It would seem imperative to integrate psychological support into the model of
care the women receive. The clinical and theoretical implications of these findings are
discussed.
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